Since the early part of the 21st century, we have included pain as the fifth vital sign in assessments, but have we considered that pain is more than a physical sensation, or a number between 1 and 10 on a scale?
Pain is not only a biological phenomenon, but a complex interaction of social, cultural and psychosocial layers.
Chronic pain, like other illnesses, often leads to suffering, which can increase the physical perception of pain. How can we, in the healthcare system, do better in addressing and treating chronic pain the multiple components of pain and suffering?
In 2012, my colleagues and I in the Pain Research, Education and Policy Program at Tufts University School of Medicine in Boston sought to better understand the newer phenomenon of blogging in relation to chronic pain and illness.
Our study, “Communicating the Experience of Chronic Illness and Pain through Blogging,” which was published in the Journal of Medical Internet Research, remains one of the largest studies to date of illness bloggers (230 respondents).
Blogs, or web logs, are user-generated online journals that can be read and commented on by readers worldwide. We were interested in what motivated individuals to initiate and share so much of their private lives in such a public and online forum.
Our study suggested that for many patients the process of blogging shifted their relationship with their illness, decreased their sense of isolation, brought meaning to their lives, and linked them back to the outside world. The isolating effects of chronic illness and pain are often unrecognized and unappreciated by those whose lives have not been shaken by a diagnosis of chronic illness. The power of connection generated by blogging that was expressed by the majority of respondents in our study.
As stated earlier, pain is not only described by the physical sensation, but also by the emotional suffering that may occur when living with a long term disease.
Words are often the only vehicle that one with chronic pain has to explain the experience. Through writing, the individual may bridge the chasm between the world of the ill and the world of the well, as Susan Sontag so eloquently describes in her book Illness as Metaphor.
Blogging and online writing may have some qualities that are absent in traditional journaling or reflective writing that is often suggested by health care professionals.While our study did not specifically identify the differences, blogging may afford a real time medium for individuals to engage with others versus the more retrospective, solitary engagement of traditional journaling. The possibility of connecting with others and sharing wisdom or information may also provide a sense of meaning or purpose for an individual with a chronic illness. Regaining a place in the world as a helper instead of one in need of help is a seismic shift for many living with chronic pain or illness. This was evident in a quote from one of our survey participants — “First I was helped; now I am helping…a reminder that I am part of the world”.
As we continue to address pain and suffering in individuals and communities, we must consider the broader definition of pain, one that includes the social, cultural and psychological nature of pain, as well as the biological aspects.
I see an essential part of our job as health care practitioners as one of bridge building; encouraging our patients to shorten the distance between the world of the ill and world of the well by enhancing connection and decreasing isolation.
About the author:
Pamela Katz Ressler, RN, MS, HN-BC is the founder of Stress Resources (StressResources.com) in Concord, Massachusetts, a firm specializing in building resilience for individuals and organizations through tools of connection, communication and compassion. Additionally, she is a faculty member in the Pain Research, Education and Policy Program at Tufts University School of Medicine. Ms. Ressler is a frequent speaker to local, national and international audiences, an author with various print and online journals, and has been interviewed extensively on her research on resilience, blogging about chronic pain and illness, and social media in healthcare. She can be reached at pressler@StressResources.com, followed on Twitter @pamressler and blogs at PamRessler.blogspot.com
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